Jasper's visit to the 8th Floor

July 22nd-24th 2017

Bruising. Nose bleed. Petechia.

No, no. Please no.

I check his temp, 99.4, no fever.

We call Dr. Kutny.  He reassures us it could be other things, but we need to get blood work.  On the way we run through in our minds the endless possibilities of what they could tell us always coming back to CANCER.  We brace ourselves for the possibility of hearing that hideous word again, but this time with our 6 month old BABY.

We check in at the ER desk and the nurse asks what's wrong.  We can't help but just cry.  I want to reply with, "EVERYTHING", instead we start explaining his symptoms followed by "his sister died from leukemia".  Her face changes. Now it makes sense why we're here.  Why that's more than just a bruise, more than just a nosebleed, more than just red dots on his collar bone.  She knows what we are thinking and now we know what she's thinking too.

After triage, we make our way to the ER room where there are more nurses with the same question. Same response through our tear filled eyes and broken voices.  Why must they make me tell them over and over again? We know the blood work will give us the answer.

They start an iv and by now the petechia has spread to his chin and back, bruising has increased as well. His platelets are low. No doubt. I remember thinking and praying over and over, "oh God, please don't be cancer".  The blood spills over his tiny little arm onto the bed as she pokes him.  His platelets must be really low.  How could this be?  I gave him a bath last night and saw nothing, absolutely nothing.  No petechia, no bruises, nothing.  It scares me how fast this has all changed.  How quickly his platelets have dropped.

The ER doctor comes in with the preliminary results platelets are 4, white count neutrophils are 8.  Wow, platelets are really low.  But we are reassured with the normal white cell count.  No leukemia blasts or anything else in the blood sample to be concerned with.  That's a good sign for us and we both take a deep breath.  We are instantly filled with relief even though doubt tries to creep in and steal our small victory.  The doctor explains the possibility of ITP, Ideopathic Thrombocytopenic Purpura, basically a autoimmune response that attacks platelets.  This was one of Dr. Kutny's possibilities as well and that gives us hope.

So where do we go from here, platelet transfusion? No, hes too little and that wont work.  The answer is IVIG, intravenous immunoglobulin.  Why does this sound familiar?  Tiny was given IVIG when her platelet transfusions weren't "sticking".  It supercharges the platelets so they won't be destroyed.  The doctor explains the infusion, how we need to be admitted, and given our family history our destination once admitted....8 QB.

Chris and I just look at each other.  Whose in charge? What other nurses are there? Whose the attending?  Which room?  Please don't give us 816.

After phone calls were made, we are able to take some deep breaths and thank God.  transport takes us up the back elevators, asking, "have ya'll been here before?"  We just look at each other and simultaneously say, "yes", as or hearts sink.  The doors open and it all comes flooding over me, like it was the first time, the last time.  We both try to fight back tears but just can't.  How are we back here?We make our way to 802 and are happy to know that, Izzy, our sweet friend and one of Eleanor's favorites is our nurse.  So strange to see these familiar faces again.  HERE.  With ANOTHER one of our babies.

Premeds begin late Saturday night, Tylenol and Benadryl, all too familiar.  He takes them well and gently falls asleep as the IVIG infusion begins.  They start slowly and increase ever so often making sure his little body doesn't go into anaphylatic shock.  I can't sleep, instead I sit by his little crib and pray,  watch him breathe, and listen to the pump, yet another familiar sound.  Our sweet nurse Renae, spends most of her night in our room although she has 2 other patients.  It makes me feel better that she's here keeping an extra eye on him.  She reassures me it is going well.  He finishes about 1 am and I finally lay down to sleep asking Renae to wake us at 4 when she gets labs.

Lab results are back and it's good news. Platelets went up to 13 and all other labs are within normal range.  We are relieved yet again and hope they will send us home by the end of the day.

Around 9 am, Dr. Aye and others come into the room for family centered round.  We are expecting to hear how well he did and how we are going home soon.  Instead, there is concern.  Dr. Xavier is concerned that something else could be going on in the bone marrow and due to his very young age, wants to do a bone marrow aspirate.  Chris asks, "Why", trying to get further information.

"TO RULE OUT LEUKEMIA".

Chris and I hold our breath and just stare at each other before we both burst into tears.  Dr. Aye comforts us and explains that Dr. Xavier wants this done solely due to his age and not our family history.  She explains that it is her protocol with very young patients.

BONE MARROW ASPIRATE.  LEUKEMIA.

No formula past 2 am and only clear fluids until 6 am.  Surprisingly, he does well with this waking at 1 to eat a 6 oz. bottle and waking again at 5:45 to take 6 oz. of Pedialyte.  He wakes only 10 minutes before they come to get us. Leah walks in the door, takes one look at us, and walks back out.  She didn't know it would be our familiar faces waiting on her there.  We know.  We didn't think it would be us again either.  We can't help but cry as we carry our sweet boy down the same walkways to the same room we've been so many times before.  We were both losing it as we entered the room.  Everyone quietly preparing their stations, looking down as if they didn't know what to say.  Known of us could look each other in the face.  The same people doing the same things bu t with HIM, without HER.  So much of this doesn't make sense.  They tell us how hell go out quickly once he gets the "magic milk" ans we sign the necessary approvals.  his sweet little eyes roll back in his head as he gently falls asleep.  Leaving is always torture. We wait in a small waiting area and just cry, begging God to not let it be cancer.  Please Lord Jesus don't let it be cancer.

Rhonda comes to get us, telling us he did fine, is waking, and that the sample pulled easily which is always a good sign. We get to go back to him, find him still a little out of it and hold him.  It's over, we'll wait on results and head back to the room.  Waiting is always so hard.  It's an emotional roller coaster as our minds literally play out ALL of the possibilities from the almost impossible to the probable and everywhere in between.  Dr. Xavier and her team return with news- NO LEUKEMIA-THE BONE MARROW LOOKED PERFECT!  Praise God.

Within an hour we were packing to go home.


Mary Poppins at Red Mountain Theatre

Mary Poppins at Red Mountain Theatre was AMAZING!  Eleanor had the best time dancing and singing along.  She was the HAPPIEST kid there- singing so loud the people in front of us kept turning around to see her and smile at her. It did this Momma 's heart good to see her enjoying herself in such a way!  It's been so long since I've seen her so excited!  My heart leaped with joy at the sight of her! What a TALENTED group of local actors.  So very thankful my sister and niece Allie were able to join us.  We all had a great time together!  A big thank you to COA for the wonderful seats!

















Cora is 3 months old!

Our sweet Cora is now 3 months old!  We did not have a 3 month check up with her pediatrician but Mommy and a few nurse friends were very curious about her weight so we weighed her on one of the baby scales up on 8th floor at COA.  At 3 months old, Cora weighs 13.8 lbs!  We knew she had gained a good bit based on the size of her sweet baby rolls. She eats 5 oz. every 3-4 hours.  Baby girl LOVES to eat!  She wears size 1 diapers and 3 months in clothes.  She has started sleeping through the night.  She is not able to stay with us overnight at the hospital while we are in PICU, so she has been staying with Chris's Aunt Sybile.  She is able to come visit during the day for short periods of time.  We miss our sweet girl and cannot wait for the day we are all together again.  












Heart Failure

After gaining remission on August 24th, we were able to come home only going to COA a couple of days a week for scans and work ups for Eleanor's bone marrow transplant scheduled for September 18th. During this time several tests were performed including an Echocardiogram, chest X-ray, CT scan and blood work.  On Friday, September 4th, Dr. Kutny met us in the hall of clinic and mentioned how her Echo results were considerably lower but he thought they were incorrect and wanted them repeated the following week. Over the weekend Eleanor acted very different. She was very tired, laying around most of the day, only getting up to play ever so often but tiring out quickly.  By Sunday she was rarely getting up except to potty or get a snack.  Chris and I knew something was wrong so we called our NP Carly to explain Eleanor's symptoms.  She recommended we come in to the ER to get checked and ease our minds.  At the ER they did blood work and much to our surprise she was negative for disease.  They told us to watch her and come back on Tuesday for our scheduled clinic visit. Monday she developed a slight cough but still did not run any fever.  We thought maybe she caught something from visiting all the clinics at the hospital.  On Tuesday we checked in for our scheduled clinic visit and explained Eleanor's new symptoms.  She was scheduled to have her bone marrow extraction that day but once we described her new symptoms Dr. McDaniel want to get a look at her lungs.  A chest X-ray and an echocardiogram revealed that Eleanor has a significant amount of fluid on her lungs and in the sack surrounding her heart.  The echo also revealed the same low heart function as was feared, 44 %, which was a drastic change from Eleanor's initial 56% before any treatments.  We were admitted to 8QB for monitoring, but quickly moved to the bone marrow transplant unit as they had a more advanced monitor to watch her heart stats. That night her heart rate went extremely high over and over again. By morning she was much worse.  The doctors were called back in and decided to do another echo, this time resulting in a 29% function.  It was at this moment we were told Eleanor would likely not survive given these circumstances.  Chris and I were in pieces.  How could this happen? We were so close to transplant, had a perfect donor, and did everything just right.  Chemotherapy.  It didn't kill Eleanor's leukemia, but damaged the cells of her heart so badly they would never recover.  We always knew this was a possibility, one of the weird side effects that only effects less than one percent of children. LESS THAN 1% of children receiving treatment.  How is it that it is OUR child? We never thought it would be her.  Eleanor was then moved to PICU, Pediatric Intensive Care Unit where we spent the next few days helping her fight for her life.  On Saturday, September 12, an NG tube was placed down her nose into her stomach to get nutrients as she was not able to keep anything down.  She gagged and vomited ALL NIGHT trying to get her tube out.  She was miserable. That is when she literally gave up on life.  She would not talk, eat, or play.  She would not let you talk to her or anyone else, you could not turn on the lights, TV, iPad, nothing.  She just wanted to sleep.  Sunday morning her heart condition worsened and the doctors told us she would not have long and that we should call in our family.  Thank God she was able to pull through.  We spent 2 more weeks in PICU consulting with Eleanor's cardiologist, Dr. Wally Carlo, Jr..  It was his recommendation that Eleanor have open heart surgery to install a Ventricular Aiding Device, VAD. The VAD would hopefully be able to sustain Eleanor's life for a couple of years and allow her time to be a big sister.  Chris and I consulted with the director of heart transplant and surgery as she explained all details regarding Eleanor's care and the device itself.  A VAD is a battery operated device placed in the heart that pumps blood from the heart to the aorta.  It requires 2 batteries that would have to charge, requiring Eleanor to BE PLUGGED INTO A WALL OUTLET while they charged.  Although this seemed like the scariest and most obsurd idea we knew it was the only way our little girl could live and at least have hope for a future here with us.  At this time we believed Eleanor was still disease free, although we were not certain because we were not able to have the bone marrow aspirate on Sept. 8th due to her new heart condition.  Dr. Wally consulted with Dr. Kirklin at UAB, who would have to approve the surgery due in part because he would be performing it but also because he is a leading authority of the VAD.  Dr. Kirklin had 2 conditions before approving the surgery: an appropriate measure of right ventricle function and a disease free bone marrow sample.  On September 29, Eleanor was put under heavy anesthesia to perform both procedures.  Chris and I were extremely scared this could be the end for our sweet girl as the surgery itself was EXTREMELY risky.  Our little girl is so strong!!!  She pulled through once again and without having to remain on a vent, PRAISE GOD! The bone marrow sample was sent off and the CVP measurement was acceptable to Dr. Kirklin.  Dr. Kutny, Eleanor's Leukemia Specialist, observed the sample of the bone marrow and to our surprise he saw NO DISEASE! He forewarned us though that it is possible for the test that was sent off to UAB could still find it.  At this point we were expecting to proceed with the open heart surgery, although slightly nervous that it could reveal disease.  Chris and I prayed for God's direction, for his plan for Eleanor to be clear and to give us the confidence and peace to pursue His plan and what was best for her.  The next day the test results were back and Eleanor was positive for disease, although barely detectable at . 03 minimal residual disease.  Our answer was clear.  The next 2 days were spent consulting Eleanor's team of doctors and making decisions together. Dr. Kutny sat us down to tell us the worst news we've yet to hear, "There aren't any options that can cure Eleanor's leukemia."  He continued to explain that the bone marrow transplant was the only option that could have cured her and that could only happen if her heart function was 40% or greater.  With a 29% function, we knew then a bone marrow transplant was off the table. After talking with Eleanor's team of cardiologists, there were no other options to pursue.  She was not a candidate for the VAD as she would not be able to withstand chemo with the device due to clotting and platelet issues that would arise.  Another reason why the open heart surgery was off the table was because the very cells that would heal Eleanor's chest and body after open heart surgery are the very cells that contain Eleanor's disease, myleoid cells (Acute Myleoid Leukemia-AML).  It was feared that even if we performed the open heart surgery and were able to give chemo, both VERY BIG IF'S, Eleanor's body would not heal and she could bleed to death.  I can't even explain the despair Chris and I felt upon hearing and thinking through this all.  After much prayer, deliberation, and conversations between Eleanor's team of doctors we discussed what our goal for Eleanor could be. This goal was to now give Eleanor the best life by managing her disease's symptoms while having as much fun as possible.  This gave us a new perspective on trusting God with Eleanor's life and Chris and I knew then what God wanted us to do- help walk her back to Him.

More info about Eleanor's AML

During Eleanor's relapse more genetic testing was done on Eleanor's DISEASED CELLS. These are the LEUKEMIA CELLS ONLY.  Within these cells testing revealed a mutation of her cancer cells that is seen in some ALL and chronic AML cases that is believed to cause rapid and uncontrolled replication.  This is possibly why Eleanor's leukemia came back so fast, but this is not completely understood. Dr. Kutny explained Eleanor's leukemia in great detail, answering many questions that both Chris and I had regarding the cause, Cora's chances of acquiring the disease, and outcomes.  

Did Eleanor inherit her leukemia from either of our families?
No, because no one on either side of your family has had childhood leukemia.  Eleanor's type of leukemia is not " passed down" through generations.

Did some combination of genes from Chris and I create or make Eleanor's leukemia?
No, it is not completely understood the cause, but is believed to have both developmental and environmental factors that cause a cancer cell to form.   Leukemia was caused when her body did not recognize this cell as bad and allowed it to duplicate itself continuously.

Does Cora have an increased risk of developing leukemia now that her sister has had it?
Yes, she is 2 times as likely since they share some genetic makeup, however; the chance of her developing it is EXTREMELY RARE, as it was for Eleanor.  The chance of a child to develop AML is about 1 in a million so twice that is 2 in a million. This is not something to worry about and is another reason we must trust God in this journey.

There is still so much to learn about Eleanor's type of leukemia and how the chemotherapies used effect the heart.  Because Eleanor's treatment has been a part of a research study, her journey will provide valuable information regarding the treatment of AML.


Eleanor is a FIRST GRADER!

Eleanor is in FIRST GRADE!  She started Sunshine School at COA on August 14th, 2015.  Although Eleanor had finished her last chemo treatments only days before and was still receiving her daily GCF shot she was all smiles on her first day of school. She was very excited to be working with Mrs. Kelly again this year with the help of a new teacher, Mrs. Lydia.  


Turtle needed a pic with the sign, ;).





Cora is 2 months old!

Our sweet Cora is now 2 months old! She is such a joy for all of us! Eleanor ADORES her little sister! On August 24th Cora had her 2 month checkup with Dr. Mays at Redmont Pediatrics.  She weighed11 lbs. and 3 oz. and was 22 1/2 inches long. She now wears size 0-3 months clothes and size 1 diapers.  Of course she has already acquired a few nicknames as did our sweet Tiny.  Eleanor has decided that Cora will be called Itsy Bitsy since she is Tiny and Cora is much smaller than her! Oh the rationale of a 6 year old- it's too funny!  We also call Cora "A-Chunk-a-Munka", now that those sweet baby rolls have gotten so large! She is so much fun for us and has started to change a lot.  She is beginning to sleep for slightly longer periods during the night, about 3-4 hours. This has made sleeping in a hospital with a baby a little easier.  She takes a 4 oz. bottle every 3 hours now.  Unfortunately Mommy was not able to keep up with such a big appetite and we have SLOWLY transitioned to formula starting around 7 weeks. This, of course, broke Mommy's heart but was a very easy transition for Cora thankfully.

                                   









Fun at the Galleria

On Friday, July 31st Mommy, Eleanor, Cora, Nana, and Uncle Andy went to the Galleria to do a little back to school shopping and have a little fun before Eleanor went back to school!  Of course we rode the train and carousel, her favorite things to do at the mall.  Mommy found some precious back to school clothes at Gymboree and Children's Place.  I was so happy that she was able to have some fun  out in public again.








Round 4 recap


Round 4 lasted from May 26- June 27th

Round 4 was the best round ever-because it was the LAST and also because our sweet Cora made her grand entrance during this time.  But it didn't begin on time as the others did.  We were supposed to begin on May 19th but with an ANC of only 700 at clinic we were sent home again until May 26th.  This meant we were able to spend Eleanor's birthday at home! Day 1 was quite exciting as Eleanor's central line to her heart had to be repaired.  Talk about a scary situation!  After doing a chest X-ray it was determined to only have torn on the outside of the central line requiring only a slight repair from the doctors who install them.  Round 4 was a fairly easy round for Eleanor although she was receiving a new chemo called "the smurf" in addition to her Cytarabine.  We weren't sure how she would do with this new chemo as it is known for being slightly harsher than the others.  Eleanor did great with it, no vomiting and only slight nausea.  Most of this round Eleanor played with her new friends, Adamari and Emma Hope.  I'm thankful she has made sweet friends to help keep her mind off the reality of what's going on. 

This round was a little harder for Mommy as Ms. Cora increased in size the last few weeks before her July 4th due date. Sleeping on an air mattress didn't help either but we did what we needed to do to keep our family all together.  On June 27th Eleanor was discharged from Children's, I was discharged from UAB, and Daddy was EXHAUSTED!  We all came home together as a family-something only God could have worked out.

Round 4 info:
*33 days in the hospital
*6 days of chemo
*16 chemo doses


Playing with Adamari and learning a little Spanish.
Crazy Rae!
Bad Cole!
Sweet Marla!
Nurse Eleanor
Fun with Emma Hope

Pulling our little friend Bryce in the wagon with his puppy.
Eleanor's Animal Parade with Katie 
A visit to the garden on the 6th floor with Cole and Katie.
Making tie dyed tshirts with Camp SAM




The Smurf
We love making tents!
A little golf- princess style